betsy
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I was diagnosed with Celiac about 3 years before being diagnosed with CC. I always wondered if there was a correlation.
Betsy
My only symptom was unexplained weight loss…..about 20 pounds in 2 months. I had no jaundice, itching or right abdominal pain. After numerous blood tests, ultrasound, CT ,MRI and biopsy, a tumor was identified and confirmed as intrahepatic cholangiocarcinoma.
Betsy
Hi Hans,
I think of Kris all the time. She had a way of writing and conveying information that really appealed to me. Sometimes I come across her postings and I feel like I’ve been stung by a bee….at first I’m surprised by the sting and then I cry a little.
She made a big impression on me.How are you?
Love,
BetsyBob,
Congratulations on your 15 year anniversary! Your story is remarkable. I am however sorry to hear of your recent cholangitis attack. I am still struggling with my bile duct issues. The surgery in August doesn’t seem to have worked.Hope you enjoy the holidays with your family and friends.
Betsy
Hi Chris,
If you want a second opinion on treatment, I suggest you call Dr. Pelley, of the the Cleveland Clinic Cancer center. I had a consult with him after my resection surgery in 2009. I have been a patient at the Clinic for the past 3 years. I have a dedicated team of doctors I adore.betsy
Hi Bob,
My doctors have always wanted to me eat as much protein as possible. I don’t remember anything being said about protein helping with ascites. Lasix worked best for me.
Betsy
Hi MK,
While I am cancer free for now, I have used lasix for ascites and ursodiol (bile thinner) which worked quit well. I had some fluid drained off my abdomen but the medications were very effective and gave me pretty quick relief. I have had as many as 3 external drainage bags to manage leaky bile duct. Overall, the drains really improve my quality of life. To reduce the risk of infection, I am on a prophylactic dose of zithromycin. The drains need to be changed about every 5-6 weeks. Drains have been in over 2 years now.Hope your mom gets much needed relief soon.
Betsy
lol!!!! frequent hospital mileage…..let’s think what the rewards would be. 1,000 hours in the hospital entitles you to a limited edition bedpan! Comes in purple, hunter green or tie-dye. Monogramming is extra.
Betsy
Hi Lainy,
Oh my gosh – it takes so much patience! I’ve spent so much time in the hospital that the hospital smells now make me nauseous.
Betsy
Hi Marion,
Thanks for asking. Unfortunately, the leak problem continues. I had major surgery again in August in an attempt to suture the leak but it didn’t work. It has taken several months for me to feel good again so there is no plan to do anything else right now. The good news is that I do feel pretty good and I’m down to two drains as opposed to three and in Jan. 2012, I’ll be three years cancer-free. 😆
Hi Marion –
300mg/3x per day. He began prescribing it for me after my resection in Jan. 2009 and said it was a bile thinner.Betsy
I am one of the long term users of ursodiol – 3 years now. No adverse reactions or side effects to report.
Betsy
